Paralyzed since I was 18 years old, I have spent much of the last 30 years thinking about the reasons why the social life of crippled people is so different from those who ambulate on two feet. After reading about the so called Ashley Treatment I decided it was time to write a book about my life as a crippled man. My book, Bad Cripple: A Protest from an Invisible Man, will be published by Counter Punch. I hope my book will completed soon.

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Monday, May 12, 2008

Disability and Language

Yesterday a long article appeared in the New York Times entitled "Taking a Chance on a Second Child". The article was written by Michael Winerip, a Pulitzer Prize wining writer. Mr. Winerip is a seasoned reporter, graduate of Harvard University and a gifted writer. Yet a day later I remain stunned and outraged by the language Winerip used. The article in question is about Jordana Holovach, her son Jacob who is severely disabled, and her decision to have a second "healthy" child.

The tone of Winerip's article is shocking. Each and every mention of disability is overwhelmingly negative. The language is antiquated, insulting, and devalues the life of a child and by extension all disabled children and adults. Among the snippets I found particularly appalling include the following:

In referring to Ms. Holovach's son: "And as much as she loves that boy and as hard as she's worked to make him whole...she felt snake bit"

Ms. Holovach's son is "confined to a wheelchair".

Ms. Holovach's son was responsible for her divorce: "Her first marriage ended in divorce under the strain" and "Jacob was a big reason".

Before Ms. Holovach's son was born "they were successful people" (note tense).

Ms. Holovach's second husband believes siblings of disabled people "felt burdened and cheated by having to care for a disabled sibling".

Other parents of children with a similar disability "let the child die quietly at home" or were "institutionalized".

Ms. Holovach's son represents "the curse and blessing of modern medicine".

Subtlety is absent as is any respect for the life of Ms. Holovach's son. Winerip describes the child as "not whole" and "confined to a wheelchair". He is also a "burden to his sibling" and responsible for the divorce of his parents. Until his birth, his parents "were successful people" meaning his birth was a failure and represented the "curse" modern medicine. If the parents had any sense they would send him to an institution or "let the child die quietly at home".

I am not parsing words nor am I taking quotes out context. The tortured language Winerip utilizes to describe disability is about as subtle as a burning cross erected outside the house of a black family. Disabled people are a burden at best. The lives of disabled people has no value when compared to "healthy people". In spite of these damning words Ms. Holovach has "made peace with Jacob as he is". Here is where I am stuck--why is the existence of disabled people such an affront to those who do not have a disability? What is so horrific about using a wheelchair? Why are disabled children segregated from their non disabled peers?

For readers of the New York Times and Winerip in particular let me clue you in on a few facts. My life has value as does the life of every disabled person in this country. Many of us are sentient and some people such as myself get angry when demeaned. The problem disabled people are forced to overcome has little to do with a cognitive or physical disability but rather social bigotry and ignorance. Disability is a social problem first and a logistical problem second. Logistical problems such as architectural barriers and inaccessible mass transportation systems would not exist if there was a social demand for the inclusion of disabled people. Instead, we get articles such as the one written by Winerip that perceive disability as some sort of perverse failure.

The New York Times routinely casts disability in a negative fashion (though I will acknowledge a small number of good articles are published). What I do not understand is why, that is why does the NY Times refuse to acknowledge what the vast majority of disabled people already know: disability rights are civil rights. If you do not believe me look it up--it has been the law for the last seventeen years. Yes, the Americans with Disability Act is indeed civil rights legislation in spite of the fact the Supreme Court has spent the last decade gutting into oblivion.

6 comments:

AAArggh! Thank you for writing this--I don't get the NYT, but it's good to know when articles like this happen, so I can brace myself for another wave of nonsensical comments about our family (older kid disabled, younger not)--it's amazing the things people will ask, the assumptions they'll make, based on articles like this. So I'll add to your list of clues for the clueless:

Not all parents feel burdened, zapped, cursed, branded, or drained by having a disabled kid--so don't treat me like I "must" feel these things. And some of us even go on to have another kid fully understanding and accepting that every kid is a new adventure--so don't assume we "must have done something" or "had all the tests" to ensure the second child's apparent health. Kids don't come with such guarantees.

Yes, people are indeed amazing. I was furious when I read the article on Sunday and waited a day before writing a reaction. After reading the article in question and many others about parenting a child with a disability I cannot help but feel increasingly grateful to my parents. I had a disability but they never treated me differently than my siblings and their expectations were the same for all of us. This was a long time ago when most parents did not have the nerve to do this. Sadly, I suspect devaluing disabled children remains common.

What a wonderful response you wrote. Thank you. As the blessed sibling of a man with CP, I am so annoyed when I hear the implication that a disabled person will "burden" his siblings. I won't tie up your comments section with all the sarcastic and angry things that brings out of me. Suffice to say my brother and my sister are both my blessings even if one uses a wheelchair and the other was a track star. Their physical abilities are so totally irrelevant to the question. Urgh!

Thank you for an excellent expose of a typical media dissemination of language and attitudes we would like not only to reform but squelch. I hope you sent some response directly to the newspaper. Yes, the ADA is a civil rights act.

"My life has value as does the life of every disabled person in this country."

De-valuing the life of someone because they are different is what to led to eugenics. A scary philosophy that is facilitated by the discriminatory statements in the NY Times article.

I'm wondering why you chose this particular post for the carnival on spirituality. I think that atheism facilitates eugenics.

Our inherent value as humans, over all other creatures, comes from that connection with the Divine; from the love of self and others (as self) expressed by numerous persons in the Bible, and notably by Christ.

Without that inherent value of each person, the social problem of disability easily dissolves into discrimination, institutionalization and elimination of anyone judged less than the others.

Therextras, I appreciate your kind words about my post. I disagree with some of what you wrote such as atheism leading to or in some way sanctioning the development of eugenics. No reputable scholar or historian I have read has made this connection. Spirituality has been part of human culture for as long as humankind has been bipedal. It is for most a fundamental part of their world view. I accept and respect those spiritually inclined but deeply resent the idea that a belief in a higher power or devotion to religion is required as you suggest. I state this not as an atheist but as one who was taught that all people are created equal. This belief, human equality, is held by many--those that are spiritual and those that are not.